Invisible Awareness

I am posting early this week because today marks the start of Invisible Illness Awareness Week during which bloggers from all over are devoting their posts to alerting the public to the various invisible illnesses that affect so many people.

I suppose this is a bit out of bounds given the stated topic of this posting, and especially given the fact that I have one of the mothers of all invisible illnesses, Chronic Fatigue Syndrome, but I tend to find awareness days and weeks and months rather tedious. It’s hard to summon up a whole lot of concern for the plight of others who aren’t directly related to you in some way.

Then again, given the high incidence of invisible illness, you probably are affected by them. Just off the top of my head, I can think of three other people in my life who have or have had such diseases. My godmother has lupus. My sister, cancer. My cousin Sarah was born with internal physical defects that caused her death before she reached adolescence.

This was some twenty years ago now, but I still remember going on outings with her. Sarah was a few years my senior, so I looked up to her emotionally, but her energy was so compromised that she sometimes had to sit in a stroller, causing many stares and even ungracious comments from passers-by. I remember, even at a very young age, feeling indignant at their appraisal of my brave cousin. Why didn’t they even try to understand? How brittle were their imaginations that they couldn’t stretch them enough to envisage a good, logical reason why an older child might need the assistance of a set of wheels? And the worst part is, my cousin was not oblivious to their estimations. So, not only did she have to deal with the physical difficulties her body presented her, she had to combat the unkind thoughts and words of others. When I think of it now, I still get mad. I get mad because, unlike her physical maladies, that extra pain she felt was completely avoidable. I get mad because those people did not intend to be mean or hurtful. They would have been mortified if they’d known the truth. I get mad because they looked at the scene and did not challenge themselves to find anything but the simplest, readiest explanation for what they saw. And I just think, really, we are better than that.

In reality, “invisible illnesses” are not truly invisible. You just have to look closer to see them. Like a few days ago, when I was shopping with my mother and sister for vitamins. The saleswoman had been nice enough, but I had gotten a strange vibe off her which translated for me (as it often does) to “for some reason she doesn’t like me (us).” I mentioned as much to my mother later, and she told me, “Oh, no. She was having terrible neck pain.” My amazing and observant mother had noticed the way the women kept rubbing her neck, had glimpsed the stick-on heating pack residing there, and had asked her gently, “You must be in a lot of pain, huh?” And the woman had melted with grateful acceptance of my mother’s acknowledgement. The thought of this interchange softens me as much as the remembrances of my cousin’s experiences cause me to harden. It cost my mother nothing to extend a half-second of understanding to this woman who, in spite of her woes, was doing her job to the best of her ability. My mother didn’t have to do anything backbreaking to make a positive difference in the saleswoman’s day—not take away her burdens, not solve her problems—just recognize that the woman was having a rough time.

There have been people who have done this for me in my life. I would like to say there have been a lot, but that would be untrue. And I get it. I do. We all have problems staring us in the face, and it’s difficult to look beyond them into someone else’s sorrows. To compound matters, when people are open to it, I often have difficulty explaining CFS to others. It’s so big and complex that I often find myself somewhat muddled when I talk about it (the brain fuzz it causes doesn’t help either). The only way I can think of to give you an idea of what it’s like, is to give you a little assignment that might help to replicate the difficulties I have experienced:

Okay, today, I want you to go for a five mile run (10, if you’re in good shape), do about twelve 200m repeats, and 50 or so push-ups. Then, I want you to eat approximately 12 donuts, have 3 or more beers, and listen to blaring loud Techno for four hours in a room full screaming bright light and a smell that is completely noxious to you (gasoline always works for me—or too much cologne, too much cologne is truly lethal). Then, I want you to pull an all-nighter. Doesn’t matter what you do—as long as it’s not relaxing and it’s not sleep. Then, tomorrow morning, attempt your regular daily grind.

Granted, I haven’t tried this protocol, and it’s probably not foolproof, but it should approximate the exhaustion, muscle pain, weakness, nausea, dizziness, sore throat, sore sinuses, and difficulty concentrating that many CFS sufferers cope with just about every day. You may or may not get the hyper-sensitivity, constipation, diarrhea, bloating, and abdominal pain. And you probably won’t experience the low-grade fever, restless sleep, insomnia, metallic taste, chest pain, back pain, depression, or hair loss, but really, we wouldn’t want to overdo it.

Actually, please don’t even consider doing the above. I haven’t the slightest desire for you to feel the way that I have felt so often over the past 16 years. I just want you to know that CFS is out there. It’s real, and it affects people in soul-crushing ways.

Come to think of it, it’s a bit odd that we aren’t more aware of invisible illnesses because everyone has had a bad day. Everyone has had times when some kind of pain—physical, emotional, or spiritual has torn at their guts and they still had to go through the motions of daily life. Still had to take care of their kids. Go to work. Give a presentation. Present a cohesive picture of wellness to the world at large. And all the while, their insides are being shredded by whatever ails them. The truth is, you can understand my pain without actually feeling all of it. You’ve had a terrible headache. You’ve had stomach flu. You were in the depths of despair when your cat died and your girlfriend stomped all over your heart. You get it. Really you do. You just need to remember that you get it.

I think the real reason that awareness weeks irritate me is that I believe that it shouldn’t be so hard to realize that our fellow humans—all of our fellow humans—have difficulties. It really shouldn’t be so tough to understand that even though someone else’s life looks peachy keen, there’s probably something they’re struggling with.

As helpful as they can be in highlighting various problems, sometimes I think we should just scrap all of these individual awareness days and weeks, and just have Human Awareness Century, during which we all become truly aware of the plights of our neighbors, our friends, and the guy sitting a booth away from us at the diner. Or, if not truly aware, at least vaguely compassionate—for no other reason than that person is human and, for all you know, may be having the day (or lifetime) from hell.

So, I ask you, during this Invisible Illness Awareness Week not to give money, not to hold a bake sale, not even to tell all your friends about invisible illnesses, but simply to extend a single ray of lovingkindness to everyone with whom you come into contact. You don’t have to like them or their actions. You don’t have to smile at them or be overly nice. Just think a single word in their direction and move on. Just think: compassion.

Hello and welcome! I am a writer, harpist/singer, artist, and crafter living with chronic illness. My goal is to live joyfully and wholeheartedly through compassion, mindfulness, and creativity. I hope you find something in these pages that adds a little light to your day. :)

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